Advocacy

Who to Write

Write to your local or state officials. If you don’t know the names of your Senators, Representatives or state Governor, call your local voter registration office or check our Advocacy Links page. Letters should be addressed, “The Honorable name, title (U.S. Senator, House Representative, Governor, etc.).”

What To Say … keep it to one page!

Introduce yourself as a person with fibromyalgia.If you wish, you can indicate your age, sex, marital status, number of children you have (if any) and whatever else you feel may be pertinent to depicting you in your situation. You don’t need to go on at length about “what” fibromyalgia is–simply print out the Fibromyalgia Fact Sheet (in PDF format) and attach it to your letter. (Click here for the Fibromyalgia Fact Sheet.)

Describe how fibromyalgia has negatively impacted your life.Here are some points you may want to address. Remember, this section should be brief—one to two paragraphs long.

How many years you have had the syndrome, including the time you hobbled along without the benefit of a diagnosis.

How much money and how many doctors it took you to get a diagnosis.

The difficulties you have had with finding a knowledgeable and compassionate physician to treat you (dollars wasted, number of wrong diagnoses or inappropriate surgeries/treatments, and mention one of the most insulting comments or humiliating situations you had to endure during this troublesome time).

The number of various treatments you have tried and how ineffective they have been.

Any problems you have had with your insurance company not paying for your fibromyalgia treatments.

Has fibromyalgia affected your employment status? Do you consider yourself to be disabled by fibromyalgia (fully or partially)? And if so, are you receiving social security disability benefits or other forms of government compensation? Have you applied for financial assistance but been turned down?

The impact that fibromyalgia has had on your family life: Has it cost you a marriage? Does it impair your ability to function as a parent?

Have you dropped out of sight “socially” due to lack of energy and uncontrollable pain? Social isolation is a nasty enemy to people who suffer daily from chronic illnesses such as fibromyalgia!

Mention if there are other members in your family, especially children, who are struggling with the symptoms of fibromyalgia.

Finishing Touches

Express your thanks.Always be polite and thank your official for taking the time to read your letter. Let him or her know that any help that they can offer would be greatly appreciated. You can also state that you would be eager to hear about any suggestions that they could provide you.

Sign off.Use Sincerely, Kindest regards, Yours truly, etc. Then sign your name. You may send out a neat photocopy of the body of your letter (if you don’t have access to a word processor and printer), but please personally sign each copy that you send out! Always include your mailing address. Government officals are obliged to respond to your inquiry as long as you provide your address.

Make copies of everything.Besides making a copy of your letter for your own files, PLEASE send us a copy as well. If you receive a response from your elected official, send us a copy too! Why? Fibromyalgia Network will continue to work with patients to keep the advocacy efforts rolling … but it would be of great help to us to know which elected officials have expressed an interest in fibromyalgia. Then we can send letters to other patients living in that particular official’s voting district or state, encouraging these people to step up their letter-writing efforts. This is a nation-wide, team approach to advocacy, and your input will help ensure success. If possible, follow-up meetings with interested elected officials, or their staff members, will be attempted by Fibromyalgia Network to add more political clout to the letter that you have already written; sort of like a one-two punch!

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or pharmaceutical industry grants. Patients should always consult their physician for medical advice and treatment.